November 2014
Newsletter

Dear Friends,

George Thomas and Ashla Rani both had met with accidents which changed their lives, nevertheless they mean to make their lives worthwhile. On the 25th of November, they met the Hon’ble Governor of Kerala, P. Sathasivam, with a request: They asked his help in their efforts to make Trivandrum a wheelchair-friendly city. Many streets in Trivandrum now have good pavements, but they do not have ramps to help people on wheelchairs get down to and out of the road. Almost none of the public buildings in the city is wheelchair-friendly, leave alone public transport. Pallium India was privileged to accompany George and Ashla Rani to the meeting with Governor Sathasivam.

You might like to know that George was recently selected to the Kerala physically disabled cricket team and Ashla, who had passed her Master of Computer Applications, is volunteering for Pallium India.

Ashla and George, Pallium India is privileged to work with you on your mission.

Refractory breathlessness, i.e. breathlessness that continues despite optimal treatment of the underlying condition is common in patients with advanced disease; however, clinicians struggle to manage/palliate this symptom effectively.

In response to an unmet need, Dr Charles Reilly, (Consultant Physiotherapist in Chronic Respiratory Disease, King’s College Hospital NHS Foundation Trust) Prof Claudia Bausewein, (Professor of Palliative Medicine, Munich University Hospital, Germany) and Prof Irene Higginson, (Professor of Palliative Care and Policy, King’s College London; Director of the Cicely Saunders Institute, London, UK) developed an innovative integrated Palliative Care, Respiratory Medicine and Physiotherapy service known as the Breathlessness Support Service (BSS) to address the needs of these complex patients.

A patient who received the BSS described it as follows:

“The blissful thing is, you can control your breathing, if you get a bad spell you can work your way through it whereas previously when I was choking I really didn’t know what to do”. (Man with ILD – interstitial lung disease).

This is the first study demonstrating the benefit of early integration of palliative care for patients with advanced chronic respiratory disease, who traditionally may not easily get access to palliative care.

Dr Rajagopal spoke about how, as a medical student, he was much affected and grieved by the screams of a neighbor who was suffering from cancer. “When I became a doctor, I chose anesthesiology – so that I could treat pain,” said Dr Rajagopal. “There has been little interest in caring for people who could not be cured. Most of them die appalling deaths, abandoned by the healthcare system.”

Dr Rajagopal expressed gratitude to Human Rights Watch for the honor and also for their support in bringing relief and comfort and dignity to so many in India.

Dr M. R. Rajagopal’s work over nearly twenty years has contributed to development of India’s National Program in Palliative Care (NPPC) in 2012 and to the Amendment of the Narcotic Drugs and Psychotropic Substances Act of India in 2014.

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

“In Bangladesh, with its population of about 160 million people, the burden of NCDs has been rising at an alarming pace,” writes Dr. Rumana Dowla, Chairperson of the Bangladesh Palliative and Supportive Care Foundation. “In a review of 23 developing countries, Bangladesh had the ninth highest age-standardized mortality due to chronic diseases, such as primary cardiovascular diseases and diabetes.”

Dr Rumana Dowla represented the IAHPC at the WHO 67th session of the Regional Committee for South East Asia on 9-12 September 2014. She worked with officials from the Ministry of Health and succeeded in including palliative care in the national plan for noncommunicable diseases (NCDs).

Writing for the EAPC blog, Dr Marta Ximena León, Associate Professor, School of Medicine, Universidad de la Sabana, Bogota, Colombia, explains how a committed group of people has worked tirelessly to make palliative care a legal right in Colombia.

Dr León recounts the long journey from the initial work to draft a palliative care law in 2008, to the eventual passing of the law in 2014.

A report in the Times of India dated November 5, 2014 states that “shame and pain caused by an ailment was the reason for one in every five suicides in India last year.”

The report continues,

“… data compiled by the National Crime Records Bureau show that 26,426 people in the country suffering from various ailments, including cancer, AIDS and paralysis, chose to end their lives in 2013. Tamil Nadu had the highest number of suicides linked to illness in 2013, with 4,362 people taking the extreme step.”

In palliative care units, it not uncommon to find patients requesting euthanasia. When you look for the reason behind the question, most of the time it is, “I cannot bear this pain” (or other suffering). Once that problem is tackled, most of them get back to the business of living and the wish to die ends. If we are able to bring a little relief to those who are suffering, and if we are able to help them find meaning to their lives during their last days, many of them would not be driven to such an extreme step.

But we are busy discussing the merits and demerits of mercy-killing without trying to offer them a little relief from their suffering!

Meanwhile, Brittany Maynard, who became the public face of the controversial right-to-die movement over the last few weeks, ended her own life on November 1 at her home in Portland, Oregon, USA. She had announced her decision to die by taking a fatal dose of barbiturates, prescribed to her by a doctor. 29-year old Maynard said goodbye in a message to her friends and family on Facebook before taking her own life.

Doctors gave Maynard six months to live earlier this year after diagnosing her with a form of brain cancer. She publicly announced her intention to move to Oregon so she could undergo physician-assisted suicide under the state’s Death With Dignity Act. “My glioblastoma is going to kill me and that’s out of my control,” she said about her decision. “I’ve discussed with many experts how I would die from it and it’s a terrible, terrible way to die. So being able to choose to go with dignity is less terrifying.”

Quite understandably, people feel for her and ask us, whether we do not agree that she has taken the right decision. Our response is, it is the right decision for her. In the state to which she and her family moved, the society had agreed that she had a right to take this decision and the law had decided to permit it. The natural question is, if it is right for Oregon, should it not be right for us?

And we say, No.

We say No because, Brittany’s decision came after she had the choice of getting palliative care. This is the essential difference between USA and India – whatever be the shortcomings, the US system does provide for palliative care, while in our country, only a tiny minority of people have access to it. Under these circumstances, we should not go by the sensational decision of one person; but should rather take into consideration the mute suffering of millions in our country who are deprived of pain relief.

We repeat, we strongly believe that it is unethical for India to discuss assisted suicide, without first providing palliative care.

Katherine Irene Pettus, Advocacy Officer, International Association for Hospice and Palliative Care (IAHPC), stresses the important distinction between ‘medicines’ and ‘drugs’.

The 1998 UN General Assembly Special Session on Drugs adopted: “A drug-free world; we can do it!” as its slogan. The Commission on Narcotic Drugs (CND) has set an explicit policy goal of reducing global demand and supply of ‘drugs’.

This leaves a very narrow policy space for palliative care advocates to promote increased supply and demand of medical opioids unless we specifically, consistently (and correctly) refer to them as ‘essential medicines’.

Pallium India apologizes for the inconvenience caused to anyone who was planning to attend our six weeks certificate courses in February 2015. Due to unavoidable demands on the faculty’s time and clashes of schedules, we have been forced to cancel the courses in February 2015.

We hope reports like these would bring to light the difficulties faced by ordinary people around the world in their efforts to remain healthy. Also that these would pave the way for a positive change in the way the world perceives healthcare.

A young doctor couple from the UK decide to give a year of their lives to voluntary service in India. We cannot but bow to the essential humanity in them that makes them want to give such a precious gift!

Please read the following from ehospice:

Hannah Fox, a GP trainee from East London is taking a year out to do an ‘Out of Programme Experience’ (OOPE) working in palliative care in Kolkata, West Bengal. Here are some portions from her new blog about her experience.

Physicians too often fail to address the needs of caregivers, a clinical review finds. Jane Gross writes in the New York Times Blog:

Not once in the years I cared for my mother did any of her physicians ask me how I was doing. When was the last time

I saw my own physician?

Was I eating properly?

Sleeping enough?

Depressed?

What did I do for fun?

Frankly, I didn’t notice their apparent lack of concern, nor had I considered it since — until hearing a recent talk by Dr. Ronald D. Adelman, the co-chief of geriatrics and palliative medicine at Weill Cornell Medical College in New York City.

PARTING SHOT

A piece of good news from Russia.

Mr Diederik Lohman of Human Rights Watch writes…

The prosecutor has dropped the appeal against Alevtina Khorinyak, the Russian physician who was prosecuted for prescribing tramadol in violation of Russian rules to a friend dying in pain and was prosecuted for drug trafficking. In Russian: http://www.krasproc.ru/news/krsk/12327 (Google translated link) Brings to an end this shameful episode.

Should we rejoice that Alevtina is acquitted or should we weep for the human stupidity that causes so much of human suffering all over the world?

To quote Shakespeare:

“How many ages hence
Shall this our lofty scene be acted over
In states unborn and accents yet unknown!”

And how much more needless suffering will have to continue before we come to our senses!

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.